The last 48 hours have been a delightful blur. Like when you’re a kid and the cotton candy at the baseball game is larger than your head. Everywhere you look is sugar. It’s sticking to you. You literally ARE sugar.
Yesterday I learned that my book, which published a week ago during the terrible Texas ice storms (AKA Snowvid-21) managed to sell without me trying. It was amazing. And it was a #1 New Release!
Thank you. Thank you. Thank you. Thank you everybody. Thank you Jesus, thank you Lord, thank you Universe, thank you Love.
I will be doing promos during the preorder. Regular price after launch will be $10.99. Right now the discount is down to $4.99. During preorder, I will vary the price every two months until launch date of February 14, 2021.
The book has a lot of narrative in it, telling how to plan a wedding through story. I interview several people and tell my story. Then there is the data I gathered from the interviews and the practical side of it.
I worked with someone at my wedding, who I’ve known a very long time who graduated from an art program at my alma mater, to do my book cover. And she swung real hard and made it happen. I love what she did with Wedding Planning for Spoonies. It’s gorgeous.
Wedding Planning for Spoonies also made it through an editor, and I’m basically ready for launch except I’m going through a marketing phase that will last until the last week of April, right before everyone gets engaged. I need ARC readers, so if you’re interested, give me a shout. Throw your hands up and shout! Don’t forget to say “I do.”
I understand I’ve been missing these past few months. I’ve been struggling to find a way to be useful and not self-destructive with this blog while suffering from difficult emotions, and I have to say that while my posting regularity may not be up to speed yet, I’m happy to interact with people again.
I am working with an editor on the book, Wedding Planning for Spoonies, and an old family friend with a degree in design is working on my final book cover. Both iterations of the project should be done by January and I hope to release the book six months from that time (with preorders!).
I’ve also created a Facebook page for the book if you’d like to give it a like and a share.
Special thanks to @KarenDScotland and @AManWithFibro who made this iteration of the book possible.
I am on iteration 4 of the book. Right now I am awaiting the official MS notes from my editor. But she did send me some more notes in an email. Right now my job is to:
Beef up word count (sitting around 20,000 words which is a bit short after gutting the book)
Make the book more hopeful and peppier
The book’s job is to serve:
the mobility impaired (meaning wheelchair users, cane users, walker users, anything that helps you move, etc)
those who suffer from chronic pain
those who have chronic illness (this is a huge range – and includes those with epilepsy)
I’ve taken a break for a week or two from writing because of various stressors in life and I’m going to take advantage of a calm day of chaos to get back in the saddle again. Thank you to those who have helped me with my interviews and surveys, you are invaluable and amazing.
If you should wish to contribute to the project, email me at firstname.lastname@example.org. The more research the better!
My wedding planning book is going through a few iterations right now. I hope to still work with my editor after doing something really really stupid (in a pain flare I should never email people at night). The plan is to focus on mobility aid users and the chronically ill. It casts a wide net. There are many conditions specifically included, but a few from the categories can be chosen to apply to someone whose condition is not specifically listed.
I’m a bit nervous about the rewrite as it’s a blow to my ego, but I have to remember the point is to help people.
I do think this book could be a game changer if I work hard enough on it.
I’d also appreciate comments on whether or not excluding sight and hearing still makes the book marketable, and how much you like the new title.
If you’re interested in helping, email me at email@example.com.
I am back in the saddle again with my book, The Disability-Friendly Wedding Planner, and I’m telling you, it’s gonna be a long road.
The book’s purpose is to help disabled and chronically ill individuals plan their weddings, but I’m not entirely sure it’s doing that right now. I’m talking to one agent who hasn’t gotten back to me yet after submitting my manuscript, and I nervously await the next steps.
Additionally, or not additionally rather, the book has been slashed a bit. It no longer covers as wide a net of disabilities as I had once liked to. Now it only covers mobility, chronic illness, and chronic pain, which when you think about it is pretty huge. There are lots of chronic illnesses and chronic pain conditions out there, and lots of varying degrees of mobility.
I have lots lots lots of research to do, and if you’d like to help, email me.
When I was engaged to my husband, I was in the process of being diagnosed with lupus and fibromyalgia. During what should have been my time of joy, I was ridiculously sick. Therefore my wedding, although I tended to it the best I could, did not have all the typical girl-things most brides obsess about.
To most women, your wedding day is your most beautiful day – and that means your physical self. I had some radical self-acceptance when it came to my appearance. There were just some things I couldn’t control, some things I had no energy to control, and some things I knew would pain me to control to the point where the gain wasn’t worth the cost.
I wondered if other chronically ill brides had similar experiences, so I wrote this short listicle.
1. Losing weight
At the time I was a vegan, swimming for 2 hours each day, and doing 45 minutes of yoga. By the time the month of my wedding had rolled around I had astronomically gained weight from pain meds. I was also bed bound and couldn’t walk like I used to. When you’ve gone from standing unassisted to needing a cane, you’re gonna nope out of doing crash dieting, binging, and sacrificing your hate-selfies to the weight loss gods. I bought WalMart spandex to get into my dress and got on with my life.
After the wedding, almost immediately after the honeymoon, I was also diagnosed with hypothyroidism after about six months of looking for it. Chuckee darn, y’all, I could’ve guessed that!
Now Pinterest and any other god awful website (I’m looking at you, Instagram) shows me body shaming, hateful things that I wish I knew how to tell the website to block, because back when I was thin I didn’t have these problems. I wonder if it’s looking at me through the camera and going, “Oh, look, a fat girl. We have to make her hate herself so she’ll use the site more.” Kinda like the time Pinterest kept sending me suicide notes while I was starting therapy. Who writes these algorithms? Yeah, I don’t know either. I only use Pinterest to pin Chronic Illness Business stuff.
In all, I gave up on sweating for the wedding, because I couldn’t move. I don’t regret it. During the time I still had a gentle yoga workout regimen, but the cards weren’t in my hands.
2. Having perfect skin
I was super stressed out and so sick I couldn’t communicate to my doctors I didn’t deem essential. For my doctors I deemed essential, such as my rheumatologist and neurologist, I would create PowerPoints on my tablet. When it came time to talk, I would pass the tablet over to them. So when it came time to see the derm, I didn’t create one. I figured he’d look at my skin and be done with it.
Unfortunately I was expected to talk at the derm, and I was not coherent due to the pain I was in. I remember the smirk on the doctor’s face. Not to mention when I was prescribed an acne cream, I couldn’t remember to use it due to brain fog and constantly being on the go with doctor’s appointments sometimes at 8AM. I lived 45 minutes out from the city.
During this time, I was also watched for developing a lupus rash, which the derm didn’t seem to understand, and proceeded to tell me what allergy shots were and how they worked like I was in 5th grade.
Are you a fellow spoonie bride?
Don’t worry. You’re still going to be beautiful whether you labored over your appearance for months or years or not. You should be yourself on your wedding day. Whatever form that is, just is. Nobody owes the world a physical beauty that is strictly theirs to keep, not even on their wedding day. Sometimes we are all forced to be who we are. If you fall in that boat, don’t worry.
I love my beta readers. Without them The Disability-Friendly Wedding Planner would not exist. Most of them are my family, so I owe them my life. However, I struggle with my beta readers from an ideological standpoint. This is something very real.
Before the book changed its name and content, my beta readers were great. They still are great, but with much crappery.
When the book transitioned to The Disability-Friendly Wedding Planner, things changed between me and my beta readers. I told my beta readers I wanted to include men, they responded men weren’t to do any wedding planning. Then, when I said I wanted to include genderqueer people, they responded with, “But they already have wedding books. Everything is already about them. You see them everywhere.”
Them. Them should be a curse word, unless you’re referring to gender-neutral pronouns.
We live in an Us vs. Them world, where many people see themselves as an US, while everyone else is a THEM. Thems are subhuman, immoral, and undeserving of what US have. Us are kind, intelligent, noble, moral, and good. Us deserves their rights and protection.
Ultimately, Us does not understand Them.
There is a way to be a Them on multiple levels, an Us on multiple levels, or partially an Us and partially a Them. This is called intersectionality – the blend of a person’s social identities that either brings them a cocktail of power and/or submission.
For queer disabled folx, they have many blends of social identities that make them a big ol’ THEM to the white, cisgender, Christian folks that have been volunteering to read my book.
Not everyone like that THEMS folx, but a few do. I hope with my book, the thems of the world are exposed as US to somebody – a lot of somebodies – and eventually everyone.
If you are a good person, hit me up in the comments. Please help me with my project. Please please please. Even if you aren’t queer, if you have chronic illness or a disability, this project can help you. This book is a traditional wedding planner for everybody – and I mean every BODY. A disabled body is an every BODY. People never realize it, but in the blink of an eye, the progression of age, anyone and everyone eventually becomes disabled. Just think of your 80 year old grandma, or how I went to athletic and active to occasionally using a mobility aid and unable to walk my dog.
A disabled body is an every BODY, so the book includes everybody.